Friday, March 30, 2012

We went to the Mayo yesterday for his appointment and ended up with an unexpected right heart cath. Surprise! Fortunately everything looked good other than they discovered Carlos is dehydrated. Everyone was a bit surprised. They dropped his Lasix way down to just 20mg a day. He and I were so happy to hear that all was well!!!!

Carlos will be re-hospitalized on April 11th to get ready for the colonoscopy on the 12th. We are hoping he will be back home by the 15th.

Wednesday, March 28, 2012

Since the last post, Carlos continues to have INR struggles. Monday they re-checked his blood and it was 5! They had him hold the coumadin the last couple nights and today it was 3.4. So tomorrow he goes in for an appointment instead of Friday. Eva, the coordinator, had a lot of questions about heart failure symptoms. They are concerned that there could be worsening heart failure which I guess can cause erratic INRs. So they moved his Friday appointment up to tomorrow. He's worried that he could be hospitalized - I told him that more than likely they would need to just tweak his meds and no hospitalization would be necessary for that. Then half an hour later, he starts coughing. MF!!! He needs to behave. I'm not sure my sanity could take another hospitalization unless it's for transplant.

We found out that there are two things standing in the way of being re-activated on the list.
1. He needs a repeat colonoscopy - they are saying to do that mid-April. Unfortunately, this requires a hospital stay of 3-4 days. He can't have outpatient because of the whole coagulation issue. They need him to have an INR less than 2 for the colonoscopy. Then they will have to get it back up afterwards.
2. He has to walk a certain distance (1100 feet) on the treadmill in 6 minutes.

We ended up getting away this past weekend to Sierra Vista, AZ. We made a trip to Tombstone on Saturday afternoon and it was great until Carlos became very fatigued and short of breath. It was disappointing for me as I wanted to do a little more shopping. But just as well - I spent too much money as it was :p Sunday we stopped at Karchtner Caverns on the way home. Carlos actually completed 2/3 of the tour of the caverns before needing to stop. I somehow had a blond moment and forgot that it would be a 1/2 mile of up and down with something like 13% gradient. WTH was I thinking!!!!

He started cardiac rehab today and did very well. He did the treadmill, some sort of biometric bike, the reclining bike, and some upper body weights. He'll be attending that program three times a week - I was very proud of him and felt a little teary-eyed at how far he has come!!!!

Thursday, March 22, 2012

Carlos had an appointment at Mayo today for a check-up. His INR was 4.77! Holy bleeding batman! So he will hold the coumadin tonight and restart at half the dose tomorrow night with a recheck on the lab on Monday. His INR never did this before so I asked about it. He had picked up about 5 pounds over the weekend that is slowly coming off and this may have caused liver congestion which is now improving....take a breath...which improves his liver's processing of medication. But no bleeding from any orifices so it's all good.

They tweaked a couple other meds but nothing major. His mean arterial pressure (MAP), which is all that is left of his blood pressure, is still trending to the higher side. So they increased his carvedilol just a bit to try and get that down (it was 90). That will help with his mildly tachy heart rate too.

We are opting not to go to Vegas this weekend due to financial constraints. instead we are gonna do something local...not sure what yet, will figure it out later tonight.

Next appointment is Friday the 30th :) Carlos starts cardiac rehab on Monday. The only two things keeping him from being relisted are needs a follow-up colonoscopy, which will probably get scheduled in the first week or so of April, and being able to walk 1100 feet in 6 minutes in rehab. I'm betting he can do that in the first session :D

Wednesday, March 14, 2012

Carlos was discharged on Monday, rather unexpectedly. We were told over the weekend that it would probably be later in the week as they wanted to watch him closely as they were increasing his coumadin. His INR on Monday was 1.69. We were both very ecstatic :-)

Yesterday, was very nice - we went grocery shopping and Carlos rode in one of those electronic shopping cart thingies. He even let me take a picture! And post on Facebook! So I did :-) Things went well. He did some walking from and to the car, without difficulty.

We went in for a check-up today and all his numbers look good. His INR was 2.2. So he's therapeutic! He was given the go ahead for showering - thank god. Imagine going 6 weeks without showering. :p. It sounds like we are still on track for me to go back to work April 1st. They feel like despite the complication he continues to do well.

We are hoping to sneak away for a weekend in Vegas before I head back to work but won't know about that for sure until the day before we want to go. Carlos should be starting rehab this week....waiting to hear from Banner Desert to schedule the first appointment. They will have him doing lots of cardio as well as weightlifting. Nutritionally, he's already where he needs to be. I guess he has to pass a 6 minute walk test in rehab for stamina then they will re-activate him on the list.

Took Carlos and Chris for haircuts or 'lowboy' fade. Whatever. They both look handsome :-)

Sunday, March 11, 2012

Today is a much better day then yesterday. We are both feeling much perkier. Yesterday, it was pity party central around here.

But my mom and I got the girls to the volleyball meeting - I haven't done that since a couple years ago. Carlos has always done it. It was nice to see lots of familiar faces for both teams. Our plan for Daja, and maybe Libby (depends on how she does this season), is to have her play up to the next age group (13-15) after this season then in November have her tryout for club ball. We think she's just that damn good :-) Not biased or anything, but other parents have come up to us and said 'wow, she's great. One of those parents played volleyball in college, so there!

Today, the pity party is over. Carlos and I went walking - to the cafeteria! That's probably the farthest he's gone to date. We sat and chit chatted by the window about volleyball. I signed carlos up as assistant coach with the understanding that health issues may interfere from time to time. Carlos used to be pretty active with girls' volleyball teams but the season or so, has been unable to do anything but watch. My mom will back him up and help out as needed also. Yesterday, while in 'poor me mode, he was unhappy that I had done that. But today, he has a much more positive take on it.

I lobbied for discharge tomorrow but unfortunately it was a no go. They want to get his INR therapeutic prior to discharge and watch him closely for gi bleeding . My logic is such that, he could go home and a week later start bleeding again. He can't stay here forever. Although there are people who have to live here until they get a transplant. But he's not one of them. So I had asked if he could go home and we would come back to the clinic everyday if need be. I tried. So his INR today was 1.5. They increased his coumadin to 10mg for tonight. So maybe by Tuesday, if we are lucky. It sucks cause the kids are on spring break so it really limits my ability to spend time with him. Tomorrow I'm bringing the kids up for a visit. I'll try to get some stuff done around the house otherwise.

Friday, March 9, 2012

Anyway, no discharge tomorrow. They are saying maybe Monday. Carlos isn't feeling well today. He's very tired. Had some nausea last night, didn't eat breakfast today, and threw up after eating some lunch. Fabulous.

They restarted coumadin last night but no aspirin or persantine. They want to go slowly. His INR this morning was 1.3.

Once they restarted his lasix, he diuresed fast! In two days, he lost 13 pounds which puts him back at his weight on ad mission. :-)
I can't summon the effort to write anything further. So more later or tomorrow.

Thursday, March 8, 2012

We got the boot from the ICU and are back on 4w. Thank god cuz all the rules and policies and lack of independence were driving me f*cking nuts. His INR is pretty low at 1.2 so they are going to start him back on the coumadin tonight and work towards getting him therapeutic. I'm hoping we are out of here by Saturday.

Wednesday, March 7, 2012

I'm warning you now. I'm feeling bitchy and crabby right now. Carlos is fine but he had passed what everyone assures him is old blood this morning. Because of that Dr Pujaro (surgeon) says he needs to stay in the ICU one more night. If anything is going to happen, it will be today or tonight. I'm like, what? Really? So, I'm just frustrated. Funny how this has done a 180. It took me weeks to convince them that he was declining, and I'm begging to get him out of here. Ugh. They won't even allow him off the unit for support group this afternoon. He feels fine, numbers look good ( his hemoglobin is 11.3), so let him do that. Ugh.

He walked this morning and went further than he has gone since this all began. He walked around our ICU pod twice then walked around the other to pods once each. While talking. And he wasn't short of breath. The nurse had the perfusionist come which was ridiculous. But it's hospital policy I guess. Even when I'm not working, I have frustrations to deal with regarding hospital policy.

Carver went home last night. Kind of feels weird to have him gone. Thanks carver, for coming and staying with us for so long. It has been a huge help!

OK, going to try and de-crab. Uh, perhaps that sounds bad. Going to try and get in a better mood. Would help if I was getting enough sleep.

Tuesday, March 6, 2012

Carlos has to spend just one more night in the ICU unless he decides to spew blood again. He's doing very well. There hasn't been any bleeding in at least 24 hours and his numbers all look great. He feels better, perky even.

The colonoscopy went well but they did find some things - some they expected and others not so much. He definitely has diverticulosis which is where the bleeding was coming from. The artery they placed the coils in was amongst a group of diverticula. That area was inflammed and edematous. The GI doc also described the diverticula as very friable - meaning very prone to bleeding. He touched a couple and they started to bleed.

The other area of concern involved the corner of the ascending and transverse colon. I wish I could put pictures up for you but my tablet just won't cooperate. There was an area that could be one of two possibilities and we won't know for sure until biopsy results come back. In people with heart failure, sometimes various organs can be affected by decreased oxygen supplies and this is one of the area of the colon most likely to occur. It's called ischemic colitis. Hopefully we will find out the definitive diagnosis later today. He said if this was the diagnosis, management would be conservative and with the LVAD in place, would likely improve over time. So more on that later when we know. He did recommend holding off on the restarting of anticoagulation for a couple days.

Other than wrapping up the GI issues, Carlos is doing great. He walked quite a distance this morning without pain, shortness of breath, or a lot of fatigue. They are letting him eat lunch today. Last night after he came back from his procedure, still high on good drugs, the first thing he told me was that he wanted one of everything on the menu. :-) They will restart him on a low dose of coumadin soon also.

Libby had a great birthday thanks to Beth and Ryanne, my mom and Jay, Kim, and Carver. I shared a video that Kim took on the Build-a-Bear expedition on Facebook. I will post some pictures there as well. I showed Carlos the video of her opening her presents. And we did video chat while we all sang to her and she blew out candles.

Monday, March 5, 2012

Wanted to share an experience that was not consistent with the standard of nursing care we have come to expect here at the Mayo.

The nurse had another nurse, T, who was in orientation (I don't know if she was a new graduate or not - surprisingly, I didn't ask). So T was doing a lot of care for Carlos under the supervision of the primary nure (and me of course). She comes into his room with the gallon of golytely prep. Here's the gist of the conversation I had with her...

Me: Oh, there's your prep for your colonoscopy.
T: Oh,no, he needs to drink this for a scan.
Me: Um, you mean the colonoscopy?
T: No, he's having a gi scan and they want him to drink this.
Me: What kind of scan requires golytely prior?
T: It's a nuclear medicine test that looks for bleeding. That's what is ordered.
Me: He had that yesterday so why are they doing it again? And why would he have to drink that for it? He didn't yesterday.
T: I don't know. I can show you the order.
Me: No, I believe that it's ordered but that doesn't make sense.
T: I don't know. *she shows me the order* Oh, you're right he had that test yesterday.
Me: So perhaps you could find out what's going on and get some clarification because I'm pretty sure the golytely is for the colonoscopy.

Really? Not to T - I understand there's a learning curve and you are a newb. But 'I don't know' is never an acceptable response unless it's quickly followed by ' But let me find out' or get someone who does know to come talk to me.

For reals - Kim was my witness to this whole frustrating conversation. This is so not what I expect from the nurses here. Everyone has been very educated and knowledgeable in response to my endless questions. And if they weren't sure, they got a provider in the room or on the phone to answer me.

Eleven. That's how many units of blood he has had so far. Getting plasma now because his INR keeps creeping up. Possibly he might have some sort of genetic blood weirdness that is causing his blood to be so all over the place. This morning, seems like the bleeding may have stopped. GoLytely fixed him. Woohoo. Who knew! I asked if we could go home now. They said no :p

I did open up the Take Them Meal calendar again so anyone is able and willing to help out, we are deeply appreciative! Meals

There was a great debate between Kim and I about how the pronunciation of hematochezia. I won. Here's a link to how to pronounce it...pronounciation. Remember Kim, it's not hemato-cheesyah.

Carlos wasn't quite as crabby as I thought he would be when I got here. He's not cracking jokes either but has smiled a tiny bit.

Colonoscopy is at three this afternoon.

Libby's birthday is today. She's 9-years-old. She gets to go to Build-a-Bear today and we will have a little party tonight for her. Carlos and I are giving her a gift certificate for a day with mom and day to include lunch, mani and pedi, and a little shopping. I posted a picture of her on Facebook :-)

Sunday, March 4, 2012

He's still bleeding. Unit #9 of pRBCs running. I'm tired of watching all the numbers and microanalyzing everything thing. I'm driving myself nuts. Looking for some peace. May have to find it in a corporeal form.

They are reversing him completely now. Trying to get his INR back to a normal person's completely. Trying to wobble along that path between the lions and the f*cking pirahnas. Argh.

Carlos is feeling better, perkier this morning. He no longer has to lie flat on his back (had to lie flat without moving for 6 hours after yesterday's procedure). His hemoglobin was up to 8.8 and his INR was 1.9. They plan to start him back on a low dose of coumadin to try and get him therapuetic once they confirm, he is no longer bleeding. He did have bleeding this morning but he also hadn't been to the bathroom since yesterday before all the procedures so they expect there will be some blood that needs to come out. They will be rechecking his hemoglobin in a bit. Hopefully it will hold steady. If it drops, then there is a possibility that he is still bleeding. S o we all get to wait and watch. He's staying in the ICU until tomorrow at least.

Saturday, March 3, 2012

Carlos was only gone for a couple hours for the bleeding scan. They were able to locate the bleeding in the cecum. They then decided to try and avoid the colonoscopy, and took him for an abdominal angiogram. The hope was that they could find the specific artery that was bleeding and inject coils to block it off. GI surgery is very risky for Carlos and they consider that a last resort.

Three hours went by before we finally got to see him and find out what happened....grrr. They were successful in inserting 4 coils into the rapidly bleeding artery. It fortunately was not a major artery. They are keeping him in the batcave (ICU) until Monday to watch him closely. They need to be sure the coils will work, otherwise surgery to remove that part of the intestine...ack! The interventional radiologist seemed pretty confident according to Carlos. He will continue to get blood products. The count is currently 6 units of pRBCs and 3 units of plasma. His last hemoglobin was 7.1 and his INR was 2.7.

So back to chilling in the batcave until Monday, flat on his back. UGH!

Carlos continues to have bleeding issues :( The GI team and Dr Pujaro had a discussion with us about the plan. One of my concerns is the fact that GI needs the INR ( most recently was at 3.6) to be less than 2 in order to do a colonoscopy. Which the head GI doc keeps telling Carlos he would need to have in two years time anyway. I'm pretty sure Carlos's preference would be two years from now, as opposed to tomorrow! The concern with the INR being that low is that is not a therapeutic range for LVAD patients. He will be at increased risk for blood clots around the pump. If that occurs, the pump would have to be replaced....but we are NOT going there. On the other hand, he said that patients have gone for days and weeks without anticoagulation and have done fine. Freaks me out a bit cause has already had a history of two clots. Sigh. So Dr Pujaro (surgeon) says it's like having piranhas on one side of you and lions on the other....we have to do something and try to balance everything as much as possible. I wasn't terribly thrilled with his analogy.
They started a fifth unit of blood to be followed by a sixth and some plasma. They took him for a bleeding scan (having link difficulties on my tablet - sorry!). We are waiting for him to return. They said he could be gone for about 4 hours.

It was a long night. And not a terribly positive night. The night shift nurse left after saying that's the most blood I've ever given in one shift. Well, that can't be a good thing.

After the first 2 units of packed red blood cells and 1 unit of plasma, his INR had dropped down to 3.3 ( goal is between 2 and 3). That was positive news. The bad news was that after continued bleeding, his hemoglobin had actually dropped a bit to 7 :(

So he then got 2 more units of red blood cells and another unit of plasma. We just got news that his hemoglobin was up to 7.6. While still pretty low, at least it didn't decrease. The INR is pending. All the docs are aware and deciding what to do with him.

Meanwhile he continues to be very tired and says he feels no different than he did when we got here.

Friday, March 2, 2012

Yesterday, Carlos had a minor episode of bleeding from a place you wouldn't expect to see blood from. We did mention it when at the clinic and it was no surprise that his INR was a bit high at 3.3 or thereabouts. But his hemoglobin was good at 9.6. So they decided to watch it.

Unbeknownst to me it happened again this morning, slightly worse. Then he started experiencing dizziness about lunch time. This happened a couple times, where I was worried he might hit the floor. We called the VAD clinic and spoke to one of the coordinators, who suggested we come on in.

When we arrived, he had some blood drawn. Then he needed to use the restroom. He was gone quite awhile. But he eventually made it back to me and the wheelchair. He said 'Tiff, it's getting worse'. Sounded like horror movie scary....I knew then, he was destined for a ticket straight to the fourth floor. We got back to the room and met with the ladies from yesterday, Eva RN, and Jennifer PA. He was barely able to stay awake at this point. They looked at his labs...his hemoglobin had dropped to 7.3. This indicated a blood loss of 2 liters in the past 24 hours. I almost fell on the floor. His INR was way high at 4.5. A therapeutic level is between 2 and 3! Shortly after the arrival of Dr Scott, he promptly committed a couple times without warning. No blood in that thank god. Dr Scott left very quickly after that, after confirming that the PA was getting him a bed.

Lots of excitement as we arrived back on the 4th floor in Pod A. It's kinda sad when you know a lot of the staff by name. The GI team came and visited as did the cardio surgeons. The plan was formulated to transfuse packed RBCs and plasma. The plasma would hopefully 'thicken' his blood up a bit so the bleeding would slow or stop enough to possibly do a colonoscopy to determine the source of bleeding. At this point a couple of possible sources were tossed out on the table such as diverticulosis and hemorrhoids but find the source seems to be on the back burner. It seems they want to replenish and slow things first. Will post more tomorrow as things develop. Carlos is very down right now.....partially from the low hemoglobin but also being back in the hospital.

Thursday, March 1, 2012

So we came home on the 28th, which was Tuesday. I'm not sure what I am going to do not having the nurse writing the date up on the whiteboard for me everyday!

Prior to discharge, we did our two outings and both went well. For our independent one, we went and saw Ghost Rider 2 which was OK. The first one was better :p. We came back to the hospital and were discharged.

After arriving home, I discovered I was running a temp and was really struggling with my asthma and breathing. Figures, after hanging out in a hospital for 30 days, I picked up the flu! Ugh, miserable. I did have a flu shot this year but oh well. It happens. It wasn't nearly as bad as the episode 3 or so years ago when I was late getting my shot. So yesterday, was like a black hole. I never left the bed other than to do Carlos's dressing change. And of course, now we have to worry and watch if carlos gets it :( Anyway, I'm feeling better today although headachy and mildly feverish now. But I can't complain, at least I don't have a tube coming out of my abdomen.
I told Carlos today, that he purrs like the cats now :-)

We went back back to the mayo for a follow-up appointment. They say Carlos is continuing to do really well. His nutritional markers are within normal limits. This is one of the criteria they look at for reactivating him on the list. When we go in on Monday, for the next appointment, they will have one of the surgeons take a peek at him and see if they can go ahead and reactivate him and at what status.

Emotionally, things have been pretty good. He struggled a bit this morning but perked up as we got moving :-)

Tomorrow's adventure is grocery shopping. I told him he could ride one of those electronic carts and maybe I wouldn't take a picture and post it on Facebook. Maybe. Lol